Ive recently been to see a consultant who has told me that he believes that I should go and see a therapist as he doesn't seem to believe the amount of pain that I am in.
He did an extremely uncomfortable internal scan and says there seems to be no sign of endometriosis and, although my right ovary appears to be stuck down, he seems to believe I'm overreacting about pain. He tells me that a therapist will help me get rid of the "baggage" i'm carrying around which may be a reason for the pain; even though this 'baggage' occurred years ago and i've spoken to many people about it and have it sorted out in my head.
I now feel more along than ever, any advice?
Thanks x
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Ellie19
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Have you had an internal scan? If it's a scan that's shown that your ovary is stuck then I would have thought the next logical step would be to refer you for a laparoscopy, not a therapist!
I would request a second opinion from another consultant if I were you, it seems like this Doctor is unfortunately one of the ones who doesn't believe endo exists.
Thanks for the reply Yeah he did an internal scan and that was how he came to realise that my ovary seems to be stuck! I had surgery for the endo just over a year ago, but the symptoms seem to be coming back with a vengeance. Now i'm being told that the endo isn't the problem, but yet my ovary is stuck? Completely confused now!
Well endo unfortunately does grow back as far as I think - a lot of ladies on here seem to have the Mirena coil fitted with varying levels of success after a lap, or go on the contraceptive pill to keep their symptoms to a minimum.
This isn't an option for me as I'm trying to conceive (with endo and pcos - YAY *sarcasm*!). It still sounds like a second opinion might be in order for you, though!
That's what I have also gathered from what I've read on here! I have the mirena coil fitted which had improved things up until the last few months, I think I'm going to go on to the pill on top to see if that helps. But yes, I agree with you, a second opinion seems to be the right course to take now!
Oh poor you with pcos on top of endo! I wish you every success with conceiving Thank you for taking the time to give me some advice xxx
I had similar problems 14 years ago when I was finally diagnosed. If your ovary is stuck the likelihood is that its Endo. Unfortunately most scans wont show Endo, the best way to try and get it confirmed is an MRI scan but the consultant reading the results needs to know what they are doing. The only other option is another Lap. Ive had 8 in 14 years and every time more Endo was found so it is possible it has grown back since you had the Lap.
14 years to get diagnosed? That is ridiculous! I've never been offered an mri which I don't quite understand? This consultant is meant to be an endo specialist but yet he is going off an internal scan?! How am I meant to get somebody to listen? I don't even know what my ovary is stuck to! 8 laps in 14 years? Do you get a lot of pain from scar adhesions? Thanks for the advice x
No it took 4 years to get me diagnosed and that was 14 years ago. An MRI shows layers of tissues and therefore shows any areas with extra thickness that helps to identify the Endo. This website explains in more detail radiologyassistant.nl/en/p4... I have had many types of scans and am positive that you cannot confirm Endo through an internal scan, its not precise enough and only shows the top layers and not what sits beneath. The thing no-one ever told me is that you have a legal right to a second opinion, who treats you and where you get treated. If you feel your consultant is not taking you seriously ask for a second opinion. I would also ask for an MRI scan. I had severe pain for years before someone took me seriously. My GP dismissed the pain as period pains so I went to my local family planning clinic and it was them that said they thought I had Endo and they wrote to my GP. This still wasn't enough for my GP to refer me to a Gynae, the family planning clinic had to write to my GP 3 times in total to force the issue. I was finally seen by a Gynae on the NHS and my personal opinion is that they were not interested and didnt believe me when I said I was in pain. So I turned to Benenden Healthcare. Its private healthcare and costs something like £7 a month. You will need to be a member for 6 months before they treat you but that time will pass by very quickly and then you WILL get the diagnosis and treatment that you need. benenden.co.uk/
No I dont get any pain from the scar tissue, once Ive had the lap I get 18-24 months of freedom from pain and then its back again!! I find Ibuprofen is the best relief for the pain with Codeen when its really bad. To help with mood swings related to hormones I cant be without my vitamin B6 but 50mg dose, any lower than 50 doesn't make any difference.
They also tried hormonal injections on me where every 28 days I had testosterone injected directly into my womb. Its supposed to counteract the estrogen and stop the Endo growing. The side effects of this treatment is your body goes through a false menopause, you get all the symptoms (hot sweats, mood swings etc) but once the injections stop you go back to normal.
Dont give up and keep pushing to get sorted!! If it is Endo it wont go away and in my experience it got worse the longer I left it.
Well this is why I'm so hacked off and confused, because this was a private healthcare consultant and I feel completely fobbed off by him! You know your own body better than anyone right? And I know that my problem isn't going to be resolved by a therapist! The pain has gone back to exactly the way it was pre treatment for my endo!
Did the testosterone cause any other side effects?
The consultant said that he would rather not do a laparoscopy and wants to leave it to build up for a few years; surely then its a risk of more permanent damage?
How did you go about getting an mri scan? I think that should be the next port of call!
It has been a roller coaster and I have felt very alone at times! You should be able to trust your consultant but when they treat you like a number or try and make you believe there is nothing wrong you do start to doubt yourself. As you said, you know your body better than anyone and if you are in pain, you're in pain! At one point I was sent to pain clinics but unfortunately this doesnt help if you have Endo as it keeps growing! If I was you I would definitely ask for an MRI and get them to show you the scan results and talk you through it. You can make this request to your consultant directly. Its a better option than having another Lap and may shed some light on what is going on. The other issue I came across with the MRI is that the doctors were looking for Endo and did not take into consideration anything else that showed up on the scan. In my case 21 polac cysts across both ovaries! They don't necessarily impact on the pain but may impact on the growth of Endo or the functionality of the region.
The testosterone injection itself is quite painful. There's no numbing and the needle is on the big side as it gets injected through your stomach into your womb. Other than the false menopause I didn't get any other side effects and it did stop the Endo growth during that period. As soon as they stopped the Endo grew back.
Most consultants that I have seen advise not to have too many Laps as the scar tissue and continuous use of anaesthetic carry their own risks. But I decided it was more important to me to get rid of the pain than the risks highlighted. If the Endo isn't treated it continues to grow. My very first Lap only found a tiny bit of Endo. I went in privately 6 weeks later to find my womb and bowels stuck together, left ovary stuck to itself and right ovary stuck to my womb. The private consultant felt this was probably the effect of 4 years of build up while I was undiagnosed but this cant be proven.
Dont be scared to push your consultant for results or get a second opinion, private or NHS! xx
I am going to start pushing for an mri scan so that I know what is going on. At the moment I feel more confused than ever about what is going on in my own body!
I've had the zoladex injections in the past for 6 months but they didn't seem to do all that much to be honest. I haven't even been told about the possibility of testosterone injections! Sounds quite painful, but its got to be better than the pain from the endo right?!
That build up sounds awful and is exactly the reason why I don't want it being left.
Thank you for all the advice you've given me, it has really helped after 3 years of pushing at doctors etc, I think it's time i pushed them even harder to get this situation sorted out! xx
Pleasure I know how it feels to be where you are now and if I can help in any way Im happy too.
Definitely push for the MRI! One thing I have learnt is that the less noise you make the less help you get. I suffered in silence for years and I was pushed from one test to another and I said nothing at the time. At one point they even tried telling me I had an ulcer in my stomach which was ridiculous - I was 19!!
Even with my current consultant I have had to put my foot down to get answers. I think surgeons especially can sometimes forget that we are humans and not just another case. They use clinical terms that we dont understand and wizz through the information so quickly! They forget that we live with the pain day in day out so its good to remind them, get them to stop and think about what they are saying to you by asking questions and challenging anything you dont understand or agree with.
Good luck and if you want to talk any more you know where I am xx
That's what I feel like is happening to me at the moment, just being pushed through different meds etc with no helpful outcome. I am just sick of being fobbed off! Yeah I don't think they can really sympathise with the pain from endo because they don't fully understand it! Thanks so much, I will start pushing harder for answers and action being taken! Xx
I had my first lap just over 2 years ago and pain came back within 3 months, I was diagnosed with endo and cysts which were removed however the pain came back although intermittent it was back to being sharp shooting pains, I tried Zoladex for one month but I don't feel I was informed properly about the side effects (was a trainee doctor) and got terrible mood swings and hot flushes so decided if it was that bad after one month I was not going to continue with it, so I pushed and had a second lap in February this year but 4 months later the sharp shooting pains are back. I have not had my follow up appointment from the lap yet but went back to my own GP and insisted that I get referred to an alternative therapies hospital (there is one near where I live) so I have both appts there next month. Don't want to keep going for laps so hoping to find an alternative to manage the pain, I don't feel like pain killers work (been on tramadol, naproxon and codine and different times) I now have difficulty sleeping which I am sure is related but don't know what the solution is. You should definitely speak to another doctor, doctors are not always right and in my experience a lot of them have limited knowledge on endo, you know your own body so keep on at them till you feel someone is listening. Hope you get some help soon. x
So I'm not going crazy then?! I agree with you about the Zoladex, I changed into a completely different person from the mood swings! After 6 months of it I decided that the Zoladex was causing more problems than it was helping with and stopped having it!
I too have tried all of those painkillers listed but they didn't work for me either. To be honest, the amount of peoples stories I have read on here, those painkillers dont seem to do much for anybody!
Have you tried acupuncture? I've had about 4 or 5 sessions of it now and of yet don't feel much different, the pain has actually been worsening. But I have read that with many people it does help, so it's worth a try right?
I think I am definitely going to go with a second opinion, I just don't feel taken seriously and the pain feels just as bad, if not worse than it has been!
I don't appear to have any cysts showing up on an internal scan, but I'm worried about my ovary being stuck as it hasn't been like that in the past. With the pain being absolute agony and having worsened in the past few months, I'm not convinced they're both not linked to the endo.
Thanks very much I hope you manage to get somewhere with the alternative therapies x
No definitely not going crazy, to be honest the MRI and internal scans didn’t pick my endo or cyst first time round or even second time round both were only diagnosed with laps. It’s very frustrating as for someone who doesn’t have it, trying to explain the pain is difficult, mine is always sharp shooting pains near my ovaries only lasting a few seconds but can feel like someone has just stabbed me so sometimes the pain can make me drop to my knees or jump back so to someone else I just look silly. This can be daily or I can go a week or so without pain. I don’t have it as bad as others like yourself as yours sounds like it’s constant, definitely just keep pushing to see other doctors I had to have a lot of repeat visits before they would refer me but you just need to be persistent. I’m not sure what they mean by saying your ovary is stuck, possibly they could mean that you have endo that is covering it? I’m a big google fan and have read up loads and done a lot of research, I would see a different doctor and get them to explain exactly what they mean and take a note of it so you can research it yourself. Not sure where you are based but here is a link to the hospital I will be visiting for alternative medicine, I live in London so not sure if there will be anything available where you are. uclh.org/OURSERVICES/OURHOS... I did go to a Chinese medicine shop and they gave me a free consultation and acupuncture session. They advised me that I to see any benefits I would need to buy some tea leaves and drink it x number of times a day as well as have the acupuncture, they were honest and said the tea doesn’t taste good. It was expensive and I knew if it was horrible I wouldn’t be able to drink it so I didn’t go ahead. The unfortunate thing about endo is it is a chronic condition so is highly likely to return, how quickly after treatment, I guess is just your luck. I do hope you see a difference with acupuncture as taking loads of painkillers not only doesn’t work it’s just filling our bodies with more chemicals. x
I too get very sharp pains around my ovaries but they're waves of excrutiating pains where I can do nothing but double over.
The consultant didn't tell me how my ovary was stuck, he just said that the right ovary was stuck; I would imagine this is partly why I have come away from that consultation completely confused! If they discover something like that on a scan, surely they can't just ignore it?
I think I will definitely take your advice on getting them to explain things to me so that I can do some research for myself!
I am based in herefordshire, I have a place called the 'yeleni centre' near me where they treat people with chronic pain conditions and gives them 9 sessions free; only bonus to being so unwell!
I completely agree with you about the painkillers, to be honest I have mostly given up with them because filling my body with tablets that don't help is useless!
Thank you for finding that other post for me and thanks so much for your help.
Hope you get somewhere in regards to something helping the pain and feel better soon x
I've been reading alot over the last 2 days on the endo diet which seems to be cutting out caffefine, wheat and dairy which is supposed to help, it looks like something I may look into in the future but maybe cutting down on these things may also help your pain. It's good that you are getting some free sessions, hopefully you will get some relief from these sessions. As for your scan I think it would depend on how serious they think it is linked to the amount of pain your going through, only then if you push will action be taken. It's awful that so many of us have to fight for treatment, this is a hidden horrible illness but certainly finding this discussion forum has helped me so much over the last few days. Good luck with your future appointments hope it all goes well. x
That is awful a doctor would say that to you. I would go over his head and ask to speak to someone who even knows what there taking about. I have endo also I suffer every single day so I no your pain xxxx
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Yeah he did an internal scan and that was how he came to realise that my ovary seems to be stuck! I had surgery for the endo just over a year ago, but the symptoms seem to be coming back with a vengeance. Now i'm being told that the endo isn't the problem, but yet my ovary is stuck? Completely confused now!
Is it all in my head? 
Please tell me it's not all in my head
Doctor says 'it's all in my head'
Getting it off my chest
